{"id":66503,"date":"2025-08-21T11:35:17","date_gmt":"2025-08-21T09:35:17","guid":{"rendered":"https:\/\/www.tauli.cat\/actualitat\/?post_type=tribe_events&#038;p=66503"},"modified":"2025-09-05T08:31:26","modified_gmt":"2025-09-05T06:31:26","slug":"sessio-satellit-xpatient-2025-lexperiencia-pacient-en-labordatge-de-les-malalties-minoritaries","status":"publish","type":"tribe_events","link":"https:\/\/www.tauli.cat\/actualitat\/agenda\/sessio-satellit-xpatient-2025-lexperiencia-pacient-en-labordatge-de-les-malalties-minoritaries\/","title":{"rendered":"Sessi\u00f3 Sat\u00e8l\u00b7lit XPatient 2025 &#8211; L&#8217;Experi\u00e8ncia Pacient en l&#8217;abordatge de les malalties minorit\u00e0ries"},"content":{"rendered":"<p>[vc_row][vc_column][vc_column_text]Els pacients i les seves fam\u00edlies juguen un rol cabdal en els models de transformaci\u00f3 dels hospitals. Per aquest motiu, con\u00e8ixer les seves necessitats \u00e9s fonamental per generar un model d&#8217;atenci\u00f3 \u00f2ptim.<\/p>\n<p>Enguany, la jornada centrada en experi\u00e8ncia de pacient se centra en l&#8217;abordatge de les malalties minorit\u00e0ries.<\/p>\n<h3 data-pm-slice=\"1 1 []\"><strong>Programa<\/strong><\/h3>\n<p>11:00h &#8211; 11:10h: <strong>Benvinguda <\/strong>al Sat\u00e8l\u00b7lit XPatient Barcelona Congress 2025.<\/p>\n<ul>\n<li>Sra. Ana Mart\u00ed Delgado; Directora d&#8217;Estrat\u00e8gia i Qualitat del Parc Taul\u00ed<\/li>\n<li>Sr. V\u00edctor Verg\u00e9s; cap de la Unitat d&#8217;Experi\u00e8ncia Pacient i Participaci\u00f3 Ciutadana<\/li>\n<\/ul>\n<p>11:10h &#8211; 11:25h:<strong> Introducci\u00f3 a les Malalties Minorit\u00e0ries, les Unitats d&#8217;Expertesa Cl\u00ednica (UEC) i els reptes del sistema<\/strong>.<\/p>\n<ul>\n<li>Dr. V\u00edctor Manuel Mart\u00ednez; Direcci\u00f3 del Centre de Medicina Gen\u00f2mica del Parc Taul\u00ed<\/li>\n<\/ul>\n<p>11:25h &#8211; 11:45h: <strong><em>On estem?<\/em> Explicaci\u00f3 de l\u2019oficina d\u2019enlla\u00e7 i casos d\u2019\u00e8xit<\/strong>.<\/p>\n<ul>\n<li>Sr. Joan Pons; gestor del Programa de Malalties Minorit\u00e0ries del Parc Taul\u00ed<\/li>\n<\/ul>\n<p>11:45h &#8211; 12:00h: <strong>Millora XPA a Minorit\u00e0ries. Projecte per validar i si \u00e9s possible millorar el sistema actual amb la participaci\u00f3 de pacients.<\/strong><\/p>\n<ul>\n<li>Sr.\u00a0 Marcos Seneca Garcia; t\u00e8cnic de la Unitat XPA del Parc Taul\u00ed<\/li>\n<\/ul>\n<p>12:00h &#8211; 12:30h: <strong>Debat amb Pacients (o familiars)<\/strong>; qu\u00e8 \u00e9s el que ens agrada de l&#8217;assist\u00e8ncia actual i qu\u00e8 voldr\u00edem per a dem\u00e0.<\/p>\n<ul>\n<li>La Dra. Josefa Rivera, Direcci\u00f3 de Doc\u00e8ncia del Parc Taul\u00ed, presenta com s\u2019ha avan\u00e7at al Parc Taul\u00ed en l\u2019atenci\u00f3 als Pacients de Malalties Minorit\u00e0ries i modera el debat.<\/li>\n<\/ul>\n<p>Podr\u00e0s seguir la sessi\u00f3 en directe <a href=\"https:\/\/www.youtube.com\/live\/Z2MlG_KjX18\"><strong>aqu\u00ed<\/strong><\/a>.[\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>[vc_row][vc_column][vc_column_text]Els pacients i les seves fam\u00edlies juguen un rol cabdal en els models de transformaci\u00f3 dels hospitals. Per aquest motiu, con\u00e8ixer les seves necessitats \u00e9s fonamental per generar un model [&hellip;]<\/p>\n","protected":false},"author":12,"featured_media":27812,"comment_status":"open","ping_status":"closed","template":"","meta":[],"tags":[879,1228],"tribe_events_cat":[846],"_links":{"self":[{"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/tribe_events\/66503"}],"collection":[{"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/tribe_events"}],"about":[{"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/types\/tribe_events"}],"author":[{"embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/users\/12"}],"replies":[{"embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/comments?post=66503"}],"version-history":[{"count":6,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/tribe_events\/66503\/revisions"}],"predecessor-version":[{"id":67061,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/tribe_events\/66503\/revisions\/67061"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/media\/27812"}],"wp:attachment":[{"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/media?parent=66503"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/tags?post=66503"},{"taxonomy":"tribe_events_cat","embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/tribe_events_cat?post=66503"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}